‘Viral overload’: today’s post on chemonights.blogspot.co.uk/
Well done Shellebelle!
Hi Cress! Border Collies Lolly Lisalow Cybele Mandy MZ
Whooopee Maire
Hi to anyomne else Ive forgotten cos of chemo brain.
we have 8" of snow and I have thrush!!! yuk. x
QD
Hi Ladies
Just popped in from january thread to ask how everyone coped with the taxotore ive had one and had terrible bone pain i could barely walk im scared ill chicken out of next lot it was so bad annd im scared ive had an easy time till now
jenny x
QD good to hear from you!!!
Trying to snow here in east yorkshire too.
I have packed my little ones off for the first week of the hols as i overcome the SE’s of my last Tax, which actually dont feel as bad as the other 2 (or is it just we become immune to it?)
I’ve been a bit vacant recently and havent really kept in touch with everyone. Cress, i hope you are feeling a little better and have booked your hotel in Jersey!
I have my CT planning scan on Thursday and start in 3 weeks time…then I guess it’s a case of picking up the pieces…I should be heearing from the genetics people in Leeds soon hopefully too which will put that one to rest. I still feel cross that i dont know why i got this… i guess this is quite normal. i just hope that i get over it and get on with the rest of my life.
lots of love to all.
x
Jenny-I had 3 lots of taxotere with cyclophosphamide. The first one was bloody awful. I did not think I could cope with more but once I started to feel better things resolved very quickly. The 2nd 2 were unpleasant but much better than the first. Knowing what to expect and that it would resolve over a few days made it much more bearable.
Hi Jenny
Like Maire, my first Tax seemed awful but they reduced my dose for the last two by 20% and it was a lot better.
Apart from a skin reaction and feeling like i was going to get the flu, i seem to have back ache, but have had this since diagnosis.
If you feel it’s too much, speak to your onc. It’s a fine line between good and bad and my onc did say that there was a limit that we should endure before it becomes harmful.
xxx
Hi Ladies,
Maire - great that you have nearly finished rads. Looks like you are the one that has to start the planning of the christmas party.
Michelle - Congrats on not being allergic to your treatment. Must be a relief to be getting on with it.
QD - Hope your mum is doing OK and your thrush is under control. Remember the Nystan. Tastes lovely and worked for me. I know some people had pills - I am sure they will come on and remind us what. It just occured to me that you don’t say which end you have thrush… not sure Nystan works on the nether regions…
Jenny - I had terrible pain from Tax. Demand proper pain killers - Codeine at least, but try Tramodol, at least at night. Have to be honest and say that none of them stopped the pain but they did send me off to sleep, which is almost as good. Some people managed with paracetomol, but these people were not in proper pain! Don’t be fobbed off.
Mandy - good luck with rads. Do let us know how you get on with genetics. I am waiting for my result with everything crossed. I don’t think it is possible to know why this happened to us, but I am terrified of a positive result as then I need to contemplate more surgery. More surgery means more things could go wrong. Everything that could go wrong has gone wrong so far.
xxx
Hi everyone
Jenny - I had terrible joint pains with my 1st taxotere and could bareley walk. I told my oncologist & for the 2nd and 3rd cycles, as with lMandy, they reduced the dose by 20% & I take Cocodamol or Tramodal regularly- before the aches start - and it has been much better. I still ache a bit & walking up stairs is hard but it doesn’t hurt nearly half as much & is bearable.
Mandy - good luck with the rads.
Maire - must be good to know rads nearly finished - light at the end of the tunnel.
Cressida - you have had rubbish luck it shoulds have never have taken so long to get help. I’m glad that things are getting better know. good idea to plan for that much needed holiday.
Lolly - sorry you’ve been feeling so sick - hope it’s better now.
Shellebelle - it’s a shame that you can’t get the chemo with the taxones but at lewast the difference is minimal & you can continue with treatment.
QD - hope your Mum is doing well. I have been having problems with my eyes as well & hoping it will sort itself out when this poison is out of my system. Also hope that the thrush is improving.
Border Collies - I have just finished my FEC 6 as well - it’s a good feeling isn’t it. Good luck with the rads.
Cybele - I do hope that your temperature has gone down & there’s no infection.
I had my final chemo last Friday. Still on the steroids so SEs not too bad at the moment the main problems being the aching joints & sewer mouth. Fingers crossed it stays like this but the great thing is knowing that whatever SEs I get they are going to be the last from the chemo & I won’t be suffering another cycle! Saw the oncologist & surgeon & I am to have WLE & full ANC - no date yet but probably end April. Then it will be 4 weeks of rads. The lump has shrunk so not a MX. I am more worried about the ANC & possibility of lymphodemia.
Take care
Hilary x
Cressida - glad that you are feeling well enough to post again - hope the imrovement continues.
QD. I had Nystatin for oral thrush, but after the first two FEC Nystatin wasn’t clearing it. Onc put me on Fluconzole 50mg capsule one a day for 14 days. This is much better but it still takes about 12 days to clear. My oncologist said that I could take the Fluconzole 150 mg tablet which you can buy for thrush in the nether regions. She said that would also work. This is a once only capsule for systemic thrush. Don’t know whether it is still available over the counter. Used to be sold as Diflucan. However, you can buy Fluconzole 150 mg once only capsule on line at Chemist Direct. Quick delivery - next day I believe, and only costs about £3. Sometimes I prefer to buy my meds this way than make a doctor’s appointment, have to get there and then sit in a waiting room of germs, which none of us need at present. Hope this helpss. I sympathise with you. I’ve had thrush all the way through not justg around the mouth but right down my throat as well and it’s nasty. Makes your mouth feel slimey and dirty. I got through bottles of mouth wash as it was the only thing that made my mouth feel clean.
H144 - I think we must have been posting together and crossed. Congrats on being poisoned for the last time. I’m 15 days post final FEC now and “hey” I feel normal, although I soon get brought back down to earth when I lookin the mirror, but that’s another story. It’s a great feeling though, isn’t it. I described it as being let out of prison when I left the chemo room for the last time.
Catzoo - hope the operation went according to plan and that you’re feeling ok. You’ve done chemo, you’ve done the op. so you’re getting there.
Cybele - hope the bug is under control. Did you mix with a lot of people at the David Bowie event. Maybe you picked up something there. I was terrified of infections and lived mainly like a hermit during treatment. You are so close to the end now that you don’t want any nasties thank you very much!!!
Hi everyone.
I haven’t been on for a while now so sorry for not being there for any support that was needed. FEC 5 has hit me like a brick; all the SEs have been the same this time but intensifiedby what seems like x 10, it’s been almost unbearable and today (day 14) has been the first where I have even felt human. I hope FEC 6 next Friday will not be so unkind, but even if it’s not, it’s the last cycle so I’m almost looking forward to it.
I’ve got the date for my mx which will only be 19 days after my last chemo so I hope my bloods will be up to scratch in time.
It’s great to see more people having finished their chemo now and encouraging that people are looking forward to holidays etc… I was due to go on holiday with my Sister, Two Brothers and familys on Good Friday but I don’t feel up to it and don’t want to spoil it for everyone. I’m feeling really sorry for myself at the moment, but there’ll be other opportunities some time soon.
Hugs to all and good luck with all upcoming appointments.
Hamley so sorry that you have been feeling rough through this FEC. My worst was FEC x4 and I can remember posting that I felt as if I’d been clouted with a sledgehammer. FECx5 was better and I hardly noticed FECx6 apart from persistent oral thrush and bad eyes. Now 15 days post final FEC and I feel normal. Knowing it’s the last treatment seems to do something to to you pschologically. I really hope you have my experience of the last FEC and that it will be kinder to you. Good luck with your forthcoming op. You’ve got to get strong for that.
Morning everyone , 3rd wk good wk, my arse , is that a myth , I’ve felt so tired , chest aches , lungs ache, legs ache , havnt the energy to breath or do anything at all, I’ve took my steroids this morning so I’m hoping they give me some energy , 5th tax and C is looming tomorrow , so I’m off to have my bloods done this morning , and as for the snow I wish it would bugger off , snowing again now and I’ve to drive to the hospital soon , also I’ve got a feeling like my food is coming back up or getting stuck , it does feel better with omaprazole so I assume it’s reflux , has anyone else had this , sorry im a moaning trout today feel like I’ve had enough today and can’t believe I’ve got to do it again tomorrow and feel so drained already , catch up with you all later when more time , love to you all , Lisa xxx
Hi Lisa. If it’s any consolation what you are describing is exactly how I’m feeling. Tax has sat really heavy on my lungs too which I find really disconcerting. I’ve taken domperidone for the stuck feeling and it seems to have worked. Bizarly I am still eating like a horse despite feeling sh**e and not being able too taste anything. My 5th and 6th wasn’t quite as bad as 4th. Make sure you rest and listen to your body.
Hamley. Good to hear from you. Sorry you’ve been feeling so rubbish. Nearly there. Are you having recon at same time? Have a good rest over Easter.
Lots of love
Mx
Hamley, so sorry to hear FEC5 so bad - BIG HUG xxxxx
It’s weird how the cycles can vary so much. For me FEC4 was by far the worst, FEC5 has not been nearly so bad because of all the extra steroids.
Know what you mean about FEC6 - I don’t care how bad it is, just bring it on, because whatever happens IT’S THE LAST ONE.
I have been fairly demented for the last few days with this bug and NOT wanting to go to the hospital. Luckily my temperature hasn’t gone above 37.4, so my OH hasn’t been forced to take me there forcibly, which I think he might well have done if it came to it.
I’m still feeling really ill - this is a flu type bug and it’scompletely knocked me out, which wasn’t hard given how weak I am anyway - but it doesn’t seem to be getting any worse.
I know it’s stupid not to go to the hospital, but just thinking about being there again, and people sticking needles in me, makes my brain implode. I’m not sure I can guarantee the safety of the next person who tries to stick a needle in me. I’ve never had a problem with needles, doctors or hospitals before, but now everything inside me rises up and screams ‘NO!!!’ if I even think about it.
I am really feeling quite demented this week. Thank God it will be over soon- I don’t just want my life back, I want my sanity back.
The only comfort is coming on here and realising that everyone else is pretty much in pieces at this stage, too - and that those of you who have finished seem to be sounding much, much saner again already.
Oh how we will laugh over all this at our summer party!
love and hugs to everyone xxxxx we shall overcome xxxx
Hi Ladies,
H144 - well done on finishing and Yay! to shrunken lump. Good luck with surgery.
Hamley - sounds like a really rough time. At least the end is in sight. You are absolutely entitled to feel sorry for your self and should not apologise for it. How sh*tty to have to pull out of a holiday cos of this cancer sh*t. I am furious and would like to come round and slap cancer. Now I want the crackers party to actually be a weekend break. Might be a bit of a fantasy, but it will cheer us up to plan it anyway. Where do you want to go? xxx
Lisa - another one having a rough time. You also need to vote for our fantasy weekend destination. As for acid reflux - can you double your Omeprazole? You can take 40mg if you are still on 20mg. Ask when you have No 5 tomorrow. then you might be able to eat more chocolate eggs. The expression “moaning like a trout” made me laugh out loud. Good luck tomorrow, xxx
Cybele - you are a very stubborn girl. Stubbornness is scientifically proven to improve your chances of surviving this sh*t. At least that is what I think I heard. Hang in there girl. Visualise Turkey. Go to A&E when it gets as hot as Turkey. I want to go to the Bowie exhibition with you. Or the Pompeii thingy - just saw it advertised - no idea if it is any good. xxxx
As for me - Lost all sense of “ill” or “well”. Running a bit of a temp but keeping it under 38. Hoping to hang on till I see the nice palliative care doc tomorrow. Much as I have enjoyed pain free oblivion, it might be time to recover some of my senses as all I do is doze. Didn’t notice I was “ill”. Even having the sh*ts didn’t act as a clue. Can’t go back to hosp, especially at bank hol weekend.
Wishing you all a pile of chocolate eggs, functional taste buds and no indegestion or nausea, xxxx
Don’t know quite how to say this when you are all having such a struggle…but that’s me finished radiotherapy!
Skin is fine, hardly changed colour at all. Mad itchy under my arm though. The nurse looked at it today and gave me dressings and gel just incase it breaks down when I’m in Rome but she doubts I’ll have any problems. She said itchy is fine, if it gets nippy that’s a sign the skin is breaking down. Heceptin has been fine too. Only had runny nose. My sore hip seems to have resolved so I’m guessing it was a lingering side effect of Tax.
My hair is starting to grow back but only on my head and I’m still losing eyebrows. Worryingly hair is very sparse on the top of my head. Quite worried about male pattern baldness. Gulp.
Back at work 5 mornings a week and will increase afternoon hours after Easter.
Life is now throwing new spanners in the works however as the local council is trying to shut down my youngest daughter’s school. My job depends on the school and I have an emotional attachment so am now protesting at every opportunity. Is that flame thrower still kicking about?
The only reason I’m in this place at the moment is because I missed 2 chemos so I still feel like a dirty, rotten cheat. All you crackers will have done the full bhoona-and Cressida has gone beyond the bounds of duty to allow full chemical warfare to savage her body!!!
So when you get to where I am your joy will be unbounded and you will know that you have suffered and endured to give yourself the best chance against that b***h, cancer!
For anyone worrying about radiotherapy-it honestly is a breeze compared to chemo. You get zapped, you feel nothing, the nurses are lovey and you just lie on your back while they say “I’m a bit ant” or “I’m imf” and then they move you slightly. Zap and you’re done. You meet the same people every day (depending om your timings) and bond very quickly. I ended up feeling lucky to have breast cancer because so many people are much worse off. Today I met a woman who was getting radiotherapy to her mouth area
My next hurdle will be the Tamoxifen. At least if I feel crappy I will know it will def. be down to tamoxifen because right now I’m fine. Not really any more tired than I was before this journey.
So keep plodding on-I hope this is where you all will be after kicking chemo’s arse.
C’mon the summer and that glorious baldy party.
Maire - just wonderful. I need to get myself out of rut and start enjoying myself…!!!
You are an inspiration…lots of love
xxxx
Hi again, well with taxo reduced by 20% feeling much better on round 5 than 4. But sat amazed when onc said this would be fine as only very low risk person anyway.if thats so who decided that every has 6 treatments? why if 20% less ok have i not had that all along? its like they blast you fullon and see if you can cope wiehter or not you need that much. MInd despite arguing with him that my cold was nothing the extra week off treatment made me feel more human and able to cope. now feel its possible to return to work 4 weeks after last chemo.
how do people eat ? its not the foul taste putting me off its the texture everything seems to get 10secs into my mouth? mind not eatting and trips to loo do mean loosing weight!
i have had very watery eyes, no infection just pour fluid which does affect sight at times , and now a toe nail seems to be coming off. should i find a chiropodist or just leave it?
glad most are moving towards the end of chemo, i havent been told i will have any other treatment. are they liksly to spring this on me?
would certainly like to join a summer meeting, but have to laugh that most are thinking of booking hols in the sun and i have booked a western riding weekend,lol . am i being too ambiciouse. i have ridden all my life and not having my own horse at the mo has been bad .
Sorry ,but again rambling on here when i dont come very often, i think i deal for so long and then just let go! thanks if you made it this far. Hugs to all